When psychiatric services suck donkey balls (compared to other disability services).

This is my first post for BADD this year — Blogging Against Disablism Day.  Hopefully there will be others to follow.

So these days, in the USA and many other countries, different categories of disabled adults get different services that are supposed to help us live outside of institutions.  One kind of services is developmental disability services.   Another is physical disability services.  Another is psychiatric disability services.  Since the differences often have more to do with accidents of history, who gets to classify what groups of people, and so on, I’m not going to try to explain the differences here.  I’m also going to use a lot of medical language, because if I try to describe things as they are, I’ll get bogged down in language and never finish the post.  So please don’t take this post as agreement with the conceptions of disability laid down by service systems and professionals.  I’m just using their ideas for convenience.  As well, I’m speaking in generalizations.  Of course there are exceptions on all sides of this.  It’s just striking how consistently psychiatric services work a certain way, when other services either don’t work that way at all, or vary in how they work.  Psychiatric services stand out as particularly bad in this regard.

If you get DD or physical disability services, there’s a pretty good chance that a large part of your services will involve either helping you do things you can’t do (or can’t do without creating serious problems for yourself), helping you learn how to do things you can’t yet do but are within your grasp for learning, or some combination of the two.

A lot of times these tasks are broken down into ADLs (Activities of Daily Living) and IADLs (Instrumental Activities of Daily Living).  Here’s an example of how such things are often broken down:

ADLs:  Bathing, Dressing, Grooming, Mouth care, Toileting, Transferring Bed/Chair, Walking, Climbing stairs, Eating.

IADLs:  Shopping, Cooking, Managing medications, Using the phone and looking up numbers, Doing housework, Doing housework, Doing laundry, Driving or using public transportation, Using finances.

These definitions were taken from the Senior Planning Services website, in a PDF file titled ADL / IADL Checklist.  That’s just one definition.  Other lists might be longer, or shorter, or more descriptive than this one.  But it gets the idea across.

The Oregon Department of Human Services published a document that describes common ways how a person with a developmental disability might be supported in accomplishing ADLs and IADLs:

Assistance with ADLs, IADLs, and health-related tasks may include cueing, monitoring, reassurance, redirection, set-up, hands- on, or standby assistance. Assistance may be provided through human assistance or the use of electronic devices or other assistive devices. Assistance may also require verbal reminding to complete IADL tasks.

(A) “Cueing” means giving verbal, audio, or visual clues during an activity to help an individual complete the activity without hands-on assistance.

(B) “Hands-on” means a provider physically performs all or parts of an activity because an individual is unable to do so.

(C) “Monitoring” means a provider observes an individual to determine if assistance is needed.

(D) “Reassurance” means to offer an individual encouragement and support.

(E) “Redirection” means to divert an individual to another more appropriate activity.

(F) “Set-up” means the preparation, cleaning, and maintenance of personal effects, supplies, assistive devices, or equipment so that an individual may perform an activity.

(G) “Stand-by” means a provider is at the side of an individual ready to step in and take over the task if the individual is unable to complete the task independently.

That gives a pretty good overview of how disability services are supposed to work:  There are things we can’t do, or can’t do without assistance, or can’t do without being so drained afterwards that more important activities fall by the wayside.  Again, there are many other ways that we can be helped, but this gives you a good overview.

Generally, the above is what you’ll see when you’re getting services based in the DD (developmental disability) system, or the physical disability (sometimes just “general disability”, since physical is assumed the default by a lot of people) system:  You have trouble doing ADLs, IADLs, or other activities that you need or want to do.  So someone either helps you learn to do them, or helps you do them.  The kind and amount of assistance may be the same every day, or may vary day to day.  But the fact that you’re getting this assistance, does not usually change once you’ve been deemed to need it on a long-term basis.

Not so with psychiatric disability.  And here we come to the main point of my post.

Like developmental and physical disabilities, psychiatric disabilities can come with problems that make it difficult to do ordinary daily living activities.

The one that’s most obvious to me, especially through knowing people with serious problems in this area, is something referred to as avolition.  Even if you’ve never heard the technical term avolition before, you’re likely to find this description familiar from other areas of life.  Here is part of Wikipedia’s description of avolition (bolding mine, for emphasis):

Avolition, as a symptom of various forms of psychopathology, is the decrease in the motivation to initiate and perform self-directed purposeful activities. Such activities that appear to be neglected usually include routine activities, including hobbies, going to work and/or school, andmost notably, engaging in social activities. A person experiencing avolition may stay at home for long periods of time, rather than seeking out work or peer relations.

People with avolition often want to complete certain tasks but lack the ability to initiate behaviours necessary to complete them. Avolition is most commonly seen as a symptom of some other disorder, but might be considered a primary clinical disturbance of itself (or as a coexisting second disorder) related to disorders of diminished motivation. In 2006, avolition was identified as a negative symptom of schizophrenia by the National Institute of Mental Health (NIMH), and have been observed in patients with bipolar disorder as well as resulting from trauma.

[…]

Regarding schizophrenia, the American Psychiatric Association reported in 2013 that there currently are “no treatments with proven efficacy forprimary negative symptoms” (such as avolition).

When autistic people experience something that looks nearly identical to avolition, it’s likely that it will be referred to as executive dysfunction, inertia, or catatonia.  While people often mistake catatonia for a psychiatric term, it was originally a neurological term.  This is reflected in the fact that some forms of movement disorder are described as involving catatonia, where other similar movement disorders are referred to as parkinson-like in nature.  In other words, you can have the exact same traits for the exact same reasons, and what medical label gets used will depend entirely on whose territory you’re under: neurology, psychiatry, or developmental disability.  The problems may be more identical than you’d imagine.

But that’s not really the point.

The point is what happens when you have problems initiating and completing tasks as a part of the DD or physical disability systems, versus when you have the same or similar problems initiating or completing tasks as a part of the psychiatric system.  Because if you’re getting psychiatric services in your own house, I can tell you they’re highly unlikely to look anything near the above quote from the Oregon Department of Human Services.

People getting psych services in their own home don’t tend to have anywhere near as much support as other disabled people do, in getting things done that you can’t do for yourself. You’ll likely be referred for therapy and medications, even though there is no therapy or medication that gets rid of avolition very often at all.

Doing that?  Is the equivalent of, if I applied for a Hoyer lift for my myasthenic syndrome, and then instead got a referral to a neurologist and a prescription for some pyridostigmine.  Mind you, this is even assuming that therapy and meds are going to work for avolition anywhere near the level that a neurologist’s referral and a pyridostigmine prescription will help someone with myasthenia.  But even presuming they are, they’re simply not going to be sufficient to solve all the problems of avolition.

And even if therapy and meds somehow worked in the long term?  While the person was waiting to see if the worked, they’d still need services to help them get through the day in the meantime.  Avolition can result in a total standstill of daily living skills — not just a failure to socialize, but a failure to eat enough, drink enough, keep a job, any number of things.

And avolition is not the only thing that can affect people in the psychiatric system and their ability to take care of themselves.  There’s a kind of inertia that goes with depression — its different from, say, autistic inertia, but has some of the same effects in terms of rendering it difficult to move and do things.  (One of the big differences is that the depressive kind of inertia often goes along with feelings like “I’m not worth getting out of bed for” that autistic inertia generally doesn’t have.)

Worse than just leaving its clients in a state of constant neglect, the psychiatric service system often uses the excuse that doing this is for people’s own good.  After all, the saying goes, if you just let a crazy person get away with being crazy, they’ll never learn to be responsible adult citizens.  Even if over and over there’s proof that leaving people to their own devices only leads to neglect and resulting suffering.  But there’s a longstanding belief that psychiatric patients are basically like children who need the firm guiding hand and tough love that only a parent can provide.  Yes, this belief is wrong.  Yes, it’s disgusting.  Yes, it’s responsible for suffering, poverty, homelessness, and death when taken to an extreme.  And it often is.  Taken to an extreme, that is.

The way I see it, it shouldn’t matter whether your inability to get the housework done is because you’re paralyzed, because you’ve got a chronic illness, because of a cognitive disability, because of terrifying hallucinations, because you’re depressed and feel worthless and drained of all energy, because you’ve got a movement disorder, or any combination of these and other things.  If you need the help, you need the help.  People shouldn’t be cut off from such help just because, through accidents of both personal and societal history, they happen to get psychiatric services rather than some other kind of disability services.  Human beings are interdependent.  That’s how every human culture has always worked.  It’s time we started acting like it.

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When all you have is a hammer…

Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

One, overload and shutdown are not ideas psychiatric professionals are generally taught about. They generally are taught more about emotional experiences than perceptual ones.

Two, the only time many nonautistic people can be driven to something that looks like overload or shutdown is in the middle of incredibly intense emotional experiences.

I had a “friend” for awhile (in quotes because I knew her during a period where I thought friends were anyone who would tolerate my presence, even though this particular friend did a lot of things that most people wouldn’t put up with from their friends) who had been traumatized to the point where sometimes her emotions got so huge that she just froze up and couldn’t function. I frequently overloaded and shut down in front of her in a way that looked superficially similar.

Thing is, my experience of overload was this: I was simply being asked to process more information at once than was possible for me. I would hit a cognitive bottleneck and my brain would start shutting down all functions it deemed unnecessary to concentrate on processing the information so it would get working again. This could be a scary experience when I didn’t understand why it happened and fear didn’t help but it happened often enough with no help from fear or anxiety.

So even though this friend knew me at periods in my life when I frequently had speech and motor shutdowns, the last time I talked to her, she insisted on reinterpreting all of my experiences of sensory overload in terms of trauma that she imagined I experienced. Even in the face of me explaining that wasn’t the case.

(Which incidentally made me remember how often she used to take advantage of my social passivity to explain my experiences and actions to me. Even if I was able to object, she refused to listen to my objections. She just went merrily on coming up with explanations for damn near anything I did, down to the way I parted my hair. And that realization is why I now want nothing to do with her. I don’t need someone prattling on about how I part my hair for any other reason than convenience or symmetry, or creating a totally false narrative about the reasons for everything else I do. And unlike childhood, I now know I am allowed to choose my own friends.)

So according to this person, all overload is trauma-induced anxiety and all shutdown is trauma-induced dissociation. So all the times I couldn’t speak or move in her presence were automatically caused by trauma. And unlike a real friend, she’s unwilling to hear the genuine explanations. (I am glad she’s not going into psychiatry.)

And I think for her the reason she believes that is that the only thing that can cause such severe speech or motor problems in herself is severe trauma. And that is probably a reason many laypeople would leap to that conclusion.

But for psychiatrists and psychologists I think it’s related to being taught more about emotions than about certain perceptual experiences.

I once had a case manager who insisted that if I walked into a closet to get away from the language and visual overload of a meeting, then I was dissociating. She also refused to take my word for it, but in her case it was because I was just a layperson so what did I know. The fact that I have had experience with severe dissociation much of my life (mostly because of pain) and can tell a definite difference, doesn’t seem to cross such people’s minds.

I also have experiences where I find it difficult to find my body. I experience all sensory input, including that from inside my body, as external. So frequently the body awareness signals get lost in the midst of awareness of lots of other things in my environment. This isn’t dissociation. It isn’t depersonalization. I’ve had depersonalization. It’s different. This is simply an outgrowth of the way I perceive my surroundings and the way my brain orders those perceptions.

I have seen problems like this throughout literature on autism. Tony Atwood has suggested that those of us who have periodic speech problems must be experiencing anxiety. Because in nonautistic people, such problems usually come from anxiety and psychiatry calls that selective mutism. Certainly anxiety doesn’t help, and some autistic people do experience speech trouble because of anxiety. But the reason speech drops out for many of us before other things is it uses a ton of resources for most autistic people. It is cognitively difficult and it requires thinking, moving in complex ways, and listening to this horribly loud sound in your ears that makes your head feel weird inside. It’s like that program on your computer that’s a resource hog and you have to kill it to keep the rest of the computer from grinding to a halt. So get anything else resource intensive going and speech can just vanish. It’s hanging by a thread. In one of my climbing analogies it’s like hanging on a cliff by your fingertips instead of standing on solid ground and when you fall, it goes away. (And for some of us we are too badly injured in the fall to ever climb so high again.)

But that is one reason a well known autism “expert” once told me that if she could reduce my anxiety, I wouldn’t need to use a keyboard. Hello? It’s been over ten years, my anxiety has steadily reduced, and my speech has steadily reduced as well. When I met her the periods without usable speech had stretched to include most of the day. Now they’re all of the day. Reducing anxiety didn’t help.

And that’s where these interpretations are a problem. If anxiety is a component of overload by all means try to do something about it. Same if pain is part of overload. But as I discovered once my anxiety and pain had been reduced drastically (and all the pain related warnings I got about overload were gone, so I had no way to predict it)… I went to a grocery store. And… everything around me speeded up. My brain felt like it was slogging through molasses. And I got slower and slower until I just, very calmly and painlessly (but still with a sort of cognitive discomfort)… stopped. Because anxiety and pain are not at the core of overload and shutdown, they are just elements that can make it worse if they happen to exist.

And the misinterpretation is a problem because if you assume that these are at heart emotional experiences, then you will spend a whole lot of time trying to move emotions around believing it will solve overload. When the real solution to overload is learning to detect and manage it by identifying what causes it and what should be done with it. If anxiety is a factor then you should certainly do whatever you can to get it under control. But at most it’s a factor.

Overload is about a brain not having enough resources to process all the information it’s dealing with. Shutdown is about a brain doing the equivalent of a computer killing off processes that make the computer run too slow. They are not the same as anxiety and dissociation. Treating them (and other cognitive, sensory, or perceptual experiences) as if they are, doesn’t help.

Some side-by-side analogies

In the recent Wired article, Volkmar used an analogy that said that acknowledging autistic people’s right to remain autistic, or acknowledging our capabilities, went like this:

Yale’s Volkmar likens it to telling a physically disabled person: “You don’t need a wheelchair. Walk!”

The Autistic Bitch from Hell responded, partially, with:

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn’t move, and then pointed to them and said, “Look at how much help these unfortunate people need because they can’t walk without their wheelchairs!”

And all of this reminded me of an analogy I made several years ago for how psychiatry treated me when I was essentially terrified, despairing about my future, and losing assorted skills day by day while wondering why on earth I couldn’t sustain my previous abilities in some areas. I had no model for existing as a person like who I was, so I variously tried to escape this reality by coming up with an imaginary world that was better than this one, trying to decide that dreams were being awake and being awake was just a really bad dream, trying to force myself to forget that reality existed, trying to turn myself by force of will into assorted kinds of non-autistic people, and eventually attempting suicide. I eventually also figured out that none of that is the best approach to the situation, but I gave it all a really good try before giving up on it as an effective coping mechanism. :-P

The analogy seems really apt when stuck next to Volkmar’s and the ABFH’s, so I’m not even going to add to it:

To use an analogy, it was as if I had wandered into the middle of the street, oblivious to any danger in standing there, obviously missing some combination of knowledge and ability to apply that knowledge, but essentially still me. Someone had run over me and broken my leg. Then, instead of helping me out of the street and fixing my leg, they ran over my other leg and broke that, and then both my arms. Seeing that this was not working, they kept running over my legs and arms and telling me that there was something wrong with me for not getting up and walking away. Then, they got out of the car and started beating me over the head and screaming that there was something wrong with me. This is an analogy, but I believe it is a good analogy to what the system does to people who are different, or simply in the wrong place at the wrong time.

It didn’t just happen to me; it was happening to everyone around me, too. […] The puzzling thing was that while there were indeed many sadists and power-trippers in the system, there were others who no doubt went along with this puzzling behavior because they felt pressured to do so, and others who had been taught that this somehow constituted “help.”

I think those analogies are all interesting to line up side by side, since they’re all using walking as an analogy for other things, but at the same time going very different places with the same ideas.